[Chuck Pefley]

Happy New Year, Charlene!

I had a port-a-cath placed in January 2018 for blood work and chemo treatments. Only local anesthesia was used – not a general. I just had the port removed last month after almost 2 full years of intermittent access. No issues with infection or other nasties. Be sure to ask for lidocaine just prior to each access. Happy to have been in remission from lymphoma since June of 2018.

Cheers,

Chuck

[Chuck Pefley]

Hi Charlene,

Happy Holidays!!!

I’m very happy you were able to hear (and hopefully, meet) Noah Greenspan and be introduced to his Pulmonary Wellness Foundation dot Org. Noah’s an amazing fount of knowledge, inspiration, and energy … all directed toward us, the pulmonary and/or cardio-pulmonary disease afflicted community!

I can attest personally to the value of his Pulmonary Wellness Online Bootcamp. Everyone of us should do this program!!!

To answer Reshma’s food query directly, PASTA is one food that gives us more CO2 bang for our buck.

Cheers,

Chuck

[Chuck Pefley]

Hi Charlene,
Needing to use supplemental O2 does give me what I consider to be a perk. O2 use automatically qualifies for a disabled parking in the State of Washington. I think the “perk” idea is perhaps a matter of perspective. Preferential seating at the theater is another plus.

But PLEASE, don’t think for a minute that I wouldn’t rather pass up those “perks” in exchange for having healthy lungs and no need for O2!

Then again, it is what it is and I’m happy to have oxygen resources available to me.

Cheers,
Chuck

[Chuck Pefley]

Hi Charlene,

Aside from “normal” male-pattern hair loss I have experienced changes in what’s left of my hair. Thinning as well as a much finer texture. Cause? That’s the big question, isn’t it? Until running across this comment thread I simply assumed my hair changes were the result of the heavy chemo treatments I had last year which did result in complete hair loss. When my hair regrew the new texture is much finer … almost like baby hair … and also sparse in places. My full beard is however is pretty much the same as it was before chemo. Difficult for me to point to Ofev which I’ve been on for almost 2 years as the hair change culprit.

So, as with so much of life, it’s complicated.

Cheers,
Chuck Pefley

[Chuck Pefley]

Hi Katie ( @katiebagshawe )

Thanks for your info that the Galbraith Cormoran Stryke books have been serialized. I’ll have to see if the series is available online. Loved the books!

Regarding eReaders, my first was the Kindle Fire when it first came on the market several years ago. I shied away from the dedicated eReader in favor of a more capable device which could check mail and browse the web. The original Fire was the first of the color tablets from Amazon as well as being a good handheld size. When Apple introduced the iPad Mini I jumped to the apple ecosystem having been a longtime Apple user. Just recently I upgraded from an iPad Air 2 to an 11″ iPad Pro. These devices have become incredibly capable and bear only a token resemblance to the earlier units of just a few years ago.

Yes, I still pick up a book once in awhile, but the majority of my reading is via iPad or iPhone. If I get stuck waiting for something or somebody I can always open my phone and continue reading where I left off on my iPad … and vice versa.

Cheers,
Chuck

[Chuck Pefley]

Katie, Charlene, Roger, Jean-Michael,

I love this thread! Thanks for starting it @katiebagshawe,

I’ve always been a rabid reader but since being diagnosed with both IPF and lymphoma I find I’ve become even more voracious. Most of my reading is on my iPad with the Kindle app. A majority of my books come free via https://www.bookbub.com/welcome    as well as downloaded ebooks from my Library. The bulk of the titles I gravitate toward are mystery and suspense. I love the convenience of having my current library on such a convenient device.  I don’t find myself missing the feel and scent of paper.

The Canadian author Louise Penny and her inspector Gamache series in the border town of Three Pines. Also JK Rowling writing under the pen name of Robert Galbraith; a detective series far different than her splendid Harry Potter series.

Back to my book now …..

Chuck

[Chuck Pefley]

Hi Charlene,

I received my IPF diagnosis July 2016 and then in January 2018 a rare & nasty lymphoma diagnosis. The first 6 months of 2018 were spent in and out of the hospital enduring chemo treatments. Not fun. But, I achieved remission in June 2018 but was cautioned that “remission would likely be counted in months, not years”.

My outlook on life has morphed somewhat over the past couple years and become more focused on “quality” versus “quantity” of life. (Please don’t misunderstand this to mean I have any sort of death wish. I don’t.)

However, there are two quotes I encountered 40+ years ago that still resonate with my thinking at this point in my life …

Eat Dessert First … Life Is Uncertain!
and …
To Enjoy Life, Take Big Bites, for Moderation Is For Monks!

Life is to be enjoyed and in my opinion wine should be enjoyed as well IF it brings you joy.
Your mileage may vary….
Best Regards,
Chuck

[Chuck Pefley]

Hi again, Charlene,

I’ve not noticed any odor related to the heating of the plastic tubing.

I should mention as a disclaimer that plastic tubing is going to become stiff when it gets cold. That’s simply the nature of the beast. However, that said, I’ve found that the continuous oxygen flow via my concentrator tends to make the tubing stiffer over time; approximately 2 weeks for me, anyway.

I know you’re in Canada, but I’ll wish you a Happy Thanksgiving anyway ?

Chuck

[Chuck Pefley]

Hi Charlene,

Just a cautionary note when warming your cannula hose in the oven … temperature and time in oven are important. Our oven has a “keep warm” setting that is limited to 170ºf . I’ll run it up to that temperature and then simply turn off the oven before placing the hose in the oven. I also put the hose on a cookie sheet before putting into the oven for no more than 10 minutes. And FYI, I’ve used this technique on both a 25 and 50 foot extension hose from my concentrator.

Chuck

[Chuck Pefley]

Hi Charlene,

I was diagnosed with IPF in July 2016 and managed pretty well until late August 2018 when I experienced an acute exacerbation due in large part to fires in the Pacific NW. (I live in Seattle, by the way.) In terms of oxygen use in cold weather I have no experience … so far. However, I do have a couple of tips that may be of help to you and others.

First is the mater of hoses that kink. I’ve found that warming my oven to 150 or so degrees (F) and placing the stiff and kinked hose in the warm oven for no more that 10 minutes allows the kinks to be removed by stretching the hose while warm. This also leaves the hose much softer and pliable. I’ve repeated this procedure more that once with the same cannula hose although I tend to move to a new cannula every two weeks.

The fact that oxygen is flammable means I can’t lubricate my nostrils with petroleum products like Vaseline.  As an alternative I’ve found and use Ayr saline nasal gel to minimize cannula irritation in my nose. Ayr gel is water based and therefore non-flammable.

Another tip is to use soft cannulas. These make a significant difference in the feel on my face and also seem to simply be more comfortable to wear than the less flexible rigid type hose.

Chuck in Seattle, WA USA